Friday, September 1, 2017

I'm Baaaack

Good Evening,

Over the last few weeks, life has really taken a turn.  While it really has little to do with Tyler, I think its worth discussing nonetheless.  After all, as caregivers we often experience things that are outside of the scope of caregiving.  In other words, life around us will still change regardless of our struggles.  We certainly don't get a free pass from the ups and downs of typical life because our lives are not typical. 

At the very end of April I returned from vacation to find out my company wanted me to relocate to South Carolina.  My choice was to relocate or be replaced.  After nearly 13 years I was faced with perhaps my most difficult career decision ever.  On one hand I was looking at suddenly needing to find another job with comparable pay, and on the other hand making a secure employment decision but moving hundreds of miles away from Tyler, our family, friends, church, and everything else we had built over the last 6 years.  Both prospects were terrifying.  There seemed like there could not be a correct answer.

Something that my wife said made all the difference.  She told me that if we refused to relocate she would stand by me and do whatever it took to make things work.  It confirmed for me what I already felt, we enjoyed what we had built here and we needed to fight for it.  Suddenly I felt at ease.  I felt prepared that no matter what, I was making the right decision. Because we were doing what we felt was best for the family as a whole, we suddenly stopped feeling the pressure and started to let it play out.  It reminded me of JFK's quote "The only thing we have to fear is fear itself". 

Once the anxiety disappeared and we came to terms with our decision, things came into focus.  I had reached the limit with my previous company.  In many respects I had outgrown them, and they had outgrown me.  There was no blame to be assigned, it was just time to part ways. 

I was able to find a position offering very comparable pay and benefits.  After my first two weeks I am finding that they are exactly what I have needed for a while, a new opportunity in a friendly and supportive surrounding.  In other words...so far so good.

My takeaway is that as caregivers we always want to go with the high percentage play.  In other words, we don't want to assume unnecessary risk.  We find ourselves altering every decision to fit the safest scenario.  I can honestly say I'm as guilty as everyone else.  But we cannot be afraid to look at every angle and do what's right instead of what's safe.  We owe it to ourselves to take a chance on the low percentage play and follow it through. 

So to my caregiving followers, I challenge you!  I challenge you to trust your gut just a little bit more.  Give yourself enough credit to understand that you have become stronger than you realize and you will make it no matter what.  Try to be about what is right, not what is easiest!

Be well and God bless.     Tom

Wednesday, August 2, 2017

Good Memories

Good Evening,

This blog deals with some really tough subjects.  And while it's important to talk about the hard stuff, I also would like to talk about the good things.  Tyler has given me some of the most wonderful memories of my life.  I would like to share a few that stand out to me which represent the relationship he and I have had over the years:

1. A morning on the beach.  During one vacation very early in Tyler's life (he might have been about one) Tyler and I woke up before my wife.  I decided to take him down to the beach and take a few pictures and some video tape of him.  He was happy to look around, feel the ocean breeze, and hang out with Dad.  Its very symbolic of our relationship because he could always be comfortable and content, so long as we were together.

2. Jumping in the pool.  We have home video of Tyler standing at the edge of a pool, jumping into my arms.  He is laughing, jumping in over and over again.  Each time he jumps into my arms, he squeezed my neck with a big hug.  It is very symbolic of the trust we had built with each other.  He knew I would always be there to catch him.  He also showed me his appreciation for being there to catch him.

3.  Up on my shoulders.  Tyler spent much of his early years up on my shoulders.  I even did an 8-mile walk for diabetes with him up on his perch.  He enjoyed the enhanced vantage point, and I liked that he was safe, controlled, and happy.  He would often wrap his arms around my head to hug me, or stretch way down to get face-to-face with me so he could express himself to me.  He never tired of being up there.  

4.  Belly laughing.  Sometimes things strike Tyler funny.  It is usually associated with a sudden loud noise.  I always tried to make him laugh by doing loud or crazy things.  The funniest thing in the world was when I would do something to catch his funny bone.  He can laugh so hard that you wonder when he will ever take a breath.  As he is laughing he points at me and says "Daddy" as though he is saying that Daddy did something that made him crack up.  It is absolutely real and unfiltered joy coming straight from his very soul, and is the very definition of JOY.

5.  Walks.  The thing I enjoyed the most, and miss the most about him is our long walks together.  In all of our years together we never held a conversation, but we always knew how we felt.  We walked different trails.  We walked during all seasons.  Tyler never knew where he was going, but he always had his chest out and his voice happy and loud.  He walked to my right, and used his left hand to gently brush against me just to verify that I was there.  He walked very fast, but never wished to leave me behind.  Best of all, once or twice per walk, he would give me the sign language sign for "I love you".  

6.  Wrestling.  Tyler was born while I was barely in my 20's.  I still liked video games and wrestling.  One of his favorite past times was to wrestle his dad.  There was Tyler, barely able to walk, wanting me to body slam him on the couch or bed.  I could get him to imitate Hulk Hogan, Ric Flair, or Van Vader before he could say 5 words.  He squealed with joy when I pretended to suplex him, or body slam him, or pin him to the mat.  He won most of our matches, and even learned to say "two...three!".  I never complained about how fast he counted.  And while it seemed an innocent and dopey activity, he had learned that he could trust me to never hurt him.  At that time he learned human contact was a healthy thing.  And that being goofy is fun.

All of these things prove that while I took my role as Dad very seriously, there is always time to laugh.  There is an appropriate time to be silly and not take life too seriously.  Its such a blessing to look back on these memories and smile and laugh as I type.  It's also important to remember that while there are struggles, there is also tremendous love and joy.

Be well and God bless.   Tom 

Monday, July 31, 2017

Isolation

It has been a tremendous honor to continue the blog series for Jason's Connection.  There is such wonderful power which comes from caregivers banding together and sharing pieces of themselves.  The website includes content in current events, inspirational stories, resources, art, and blogs.  Most importantly, it provides us all with a feeling of belonging.

When Tyler was a baby, I remember how people would love to talk to him, and have him around.  We went to gatherings, relatives, and out to eat.  We continued with hobbies as usual, and did our best to maintain a "normal" life.  Tyler would gladly tag along for whatever trips and activities we planned.  I have fond memories of walking on the boardwalk at Ocean City, Tyler up on my shoulders.  He loved to watch people and wave at them as they passed.

Soon Tyler grew older and the behaviors began.  He was bigger and much less comfortable with his surroundings.  Getting into enclosed places or into crowded places made him edgy and aggravated.  This is where the isolation began.  I didn't recognize it at first, but it was starting.  

As Tyler grew older still, the behaviors became even more intense.  He was especially difficult to handle when I would be away for the evening.  We created more and more strategies to make sure I wasn't separated from him for long periods.  Eating in restaurants became more difficult, so we started to rely on more take-out.  We carefully selected our vacation destinations to match his needs.  

During one of the more difficult behavior periods, I was scheduled for a weekend bowling tournament a few hours away.  It was rare at this point that I would even consider this, but I felt compelled to have a weekend with friends to have a good time.  It wound up being a disaster.  Tyler was anxious that I wasn't around, and his behavior escalated all weekend. Each time I called home my wife was crying and frustrated as to what to do with him.  I counted down the hours until I got home again.

And so it would be as the years went on.  We withdrew from activities more and more.  We had some wonderful friends that would come spend time with us at our house, but we no longer visited at anyone's home.  Even our family saw us less because it became harder to visit them.  Before we knew it, we were spending every day just trying to survive without major incidents.  It was like we circled the wagons to keep ourselves, Tyler, and everyone else comfortable and safe.

In the last few years of Tyler living with us, we had become extremely isolated.  Tyler and I would spend our evenings downstairs in the man cave.  He was fairly happy playing his wii bowling, and doing other activities, and I would watch TV or work from my laptop.  My wife and daughter would be upstairs in the living room.  We were actually to the point of isolating ourselves from EACH OTHER.  

Isolation usually does not happen overnight.  Rather, it is a slow progression that one day I looked back on and realized just how far it had gone.  That isolation contributed to my anxiety and depression.  Worse yet, the isolation can feel like the best option, or the only option, so we did it more and more.  Its like a cancer that slowly spreads.

It's easy to say...don't isolate yourself!  But reality is what it is.  The important thing is to step back and take inventory of the ways you are isolating yourself.  Once you do that, find ways to minimize the isolation.  Find some alternatives to what you feel you cannot do.  Try to take full advantage of opportunities that you do have.  Simply recognize that it is a dangerous and debilitating element of what we do as caregivers and that we must fight it at all costs.  We must preserve our sense of self, even in small doses.

My prayer for all caregivers tonight is to get that breath of fresh air, even once in a while, that lets us know that we are still social individuals capable of happiness.

Be well and God bless.   Tom  

Wednesday, July 19, 2017

A Rough Subject

There is an issue out there that I have seen very little discussion on.  This issue is unthinkable.  It's an issue that gets the occasional story in the news, we know it exists, but we don't talk about.  But I will....

Caregiver murder-suicides are real.  And they happen much more than we ever hear about. One study showed that 20% of caregivers fear that they could become violent at some point with the person they care for.  The same article sighted that over 30% of caregivers admitted that they had verbally or physically abused that person they cared for.  Cases of elderly murder-suicides has risen significantly over the last decade.  This often happens when an elderly caregiver is stricken ill and realizes they cannot care for their loved one any longer.

What causes this to happen??  These are people that LOVE their child, or spouse, and would do anything for them!


  • They have not secured adequate services.  Often, caregivers do not know where to go or how to get the support that they need
  • They have not secured adequate services.  No...this is not a typo.  Unfortunately there are those times where adequate services do not exist.  Worst yet, some caregivers seek relief and are turned away
  • Untreated depression.  Many, many caregivers are at risk for anxiety and depression disorders but do not seek help
  • The "nobody else can care for them" syndrome.  Caregivers will believe that without them, the person they give care to will suffer terrible consequences.  I'd love to say that this is totally irrational, but with a lack of available services, it can be a scary reality
  • Negative stigmas.  Without doing research, caregivers can assume that all facilities are dirty, cruel, and unregulated.  While poor facilities do exist, there are many available facilities that provide tremendous support
  • Isolation.  Caregivers that have been pushed to such tragic levels may likely have a feeling of being alone.  They can feel that nobody else understands and that the responsibility has been placed fully on their shoulders
I would be willing to bet that every caregiver with a significantly disabled person has at least wondered if things would end in such a manner.  I know I did.  I was afraid that someday I would become ill and no longer be able to care for Tyler, and that I may be forced to make an unthinkable choice for both of us.  This, as I would come to find out, was an uneducated and hopeless train of thought, perpetuated by a lack of faith.  

HOPELESSNESS is the common thread with most of these incidents.  The caregiver becomes so deep in the woods of depression that they believe there is no answer, no way out.  They feel as though their own lives are gone, never to return.  

There is always hope.  Let me say that again...there is ALWAYS hope.  Even when you cannot see it, there is hope.  But to find that hope, it means reaching out to get help.  The help may come in the form of an agency that can provide services.  The help may come from family who had never been asked before.  The help may certainly come from a support group, or church family.  Afterall, the right church will help restore lost faith.

As hard as it is, we MUST recognize as caregivers that we are at risk.  When we feel that hope is slipping from our fingers, we must find means of support to restore us.  We must always take a proactive approach to ensure that we, and our special loved one, are set up to live comfortably regardless of the outside circumstances.  In other words, we must never allow our lives to become void of support and help.

Be well and God bless.    Tom

Tuesday, July 18, 2017

Spiders?

First of all, full disclosure.....I like spiders.  I think they are fascinating creatures that do great things and get an incredibly bad rap.  Perhaps it was all of the 70's movies where the spiders took over towns and sucked people's blood!


The truth is, spiders are beautiful and useful.  They make sure that our lives are not overrun with insects.  House spiders, if largely left alone, will eat all other insects in your home. Look at it this way...if you have a spider in the house, he is eating SOMETHING!

Spiders do invoke fear in many people.  The biggest reason for this is the fact that they are largely misunderstood.  People fear what they do not understand.  Seeing a spider for most people means they are going to attack you, want to hurt you, want to crawl in your ear while you sleep, or will go to the nearest toxic dump and try to grow 8 feet tall to take over the world.  These are the common misconceptions.  We fear what we don't understand!

Such is the world of those with mental, physical, and emotional disabilities.  So often there are people who are not properly educated, and think it's ok to shun people that they do not understand.  Maybe someone looks at Tyler and wonders if they can "catch something from him".  Or they are afraid of him because they can't handle that he is different.  They might feel better if he is placed somewhere out of sight from everyone else.  

Tyler is still beautiful and useful, just like that spider.  A person with cerebral palsy and confined to a wheelchair is still wonderful, smart, and charming.  A person with Alzheimer is still fascinating to listen to and share time with.  People that are considered "different" have amazing stories to share because they see life and live life much differently than we do. They are not to be shunned or feared just because they look different or behave differently!

The most rewarding thing that a "typical" person can do is to educate themselves about the wonderful creatures around them.  Just like the spider, Tyler was created by God to serve a very specific and wonderful purpose.  Take the time to understand and feel the beauty in all things...ESPECIALLY those you don't fully understand.

Be well and God bless.   Tom